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Troubling complaint: Addressing hepatitis C-related stigma and discrimination through complaint mechanisms

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posted on 2024-09-16, 23:02 authored by Emily LentonEmily Lenton, Dion Kagan, Kate SeearKate Seear, Sean MulcahySean Mulcahy, Adrian FarrugiaAdrian Farrugia, Kylie Valentine, Michael Edwards, Danny Jeffcote
The need to grapple with hepatitis C-related stigma and discrimination in Australian health-care settings has been recognised in public policy, and work is underway to address it. But how likely are people to raise a complaint when they experience stigma or discrimination? And how effective and accessible are complaints mechanisms? Given complaint procedures are considered important parts of the delivery of safe and ethical health care, these are important questions that have yet to be substantially explored. Drawing on interviews with people with lived experience of hepatitis C (n = 30), this article considers how affected people feel about complaints processes and the act of complaining. Alongside these perspectives, we discuss complaint mechanisms, and the views of stakeholders who work with hepatitis C-affected communities in policy, health, legal and advocacy roles (n = 30) on the institutional and cultural dynamics of complaint. We draw on Sara Ahmed’s Complaint! and Fraser et al.’s work on drug-related stigma to analyse these concerns that have yet to be researched, and argue that the (unlikely) prospect of successful complaint is a key part of the network of forces that perpetuate stigma, discrimination and disadvantage among people who have (lived with) hepatitis C. Although people with lived experience are often powerful advocates and acutely aware of the deficiencies in the quality of their treatment, our interviews suggest that the obstacles they face to accessing health care are seen as commonplace, intractable and insurmountable; and, that mechanisms for addressing them—where they exist at all—treat complaints in narrowly individualising terms and expose complainants to dismissal. Following Ahmed, we call for a ‘troubling’ of complaints—responding to them not as individual problems but rather as collective, structural concerns, necessitating new approaches.

Funding

This study is funded by the Australian Research Council’s Discovery Project scheme (Ref: DP200100941).

History

Publication Date

2024-09-01

Journal

Sociology of Health & Illness

Volume

46

Issue

7

Pagination

19p. (p. 1400-1418)

Publisher

Wiley

ISSN

0141-9889

Rights Statement

© 2024 The Authors. Sociology of Health & Illness published by John Wiley & Sons Ltd on behalf of Foundation for the Sociology of Health & Illness. This is an open access article under the terms of the Creative Commons Attribution‐NonCommercial License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.

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